Should i be happy now and leave it????

Having had an ultrasound showing cyst 3x3x4cm with internal echoes ???maybe heamaggeric maybe endometria, was offered ca125 which came back at 145. Urgent referral to consultant and to cut long story short without laying a hand on me he thinks that there is proabably nothing wrong, booked an ultrasound for 3 months when he expects the cyst will have disppeared. I persuaded him to let me have another ca 125 whcih he agreed to put my mind at rest. Can he really be so sure I dont need further investigations?????

17 Replies

oldestnewest
  • If I were you, I'd ring the Ovacome nurse helpline on Monday (0854 371 0554, I think ... ), and get a bit of advice. I would want it checked out, if it were me. Also on that website there's a bEAT online symptom checker on the left hand side of the page, via BEAT ovca with Ovacome. It may give you some evidence to print out and take to your next appointment

    Good luck

    Wendy xx

  • Thanks wendy. Going to see what my blood result is on Monday. If still same or higher I may ask for a second opinion. If my reading was 200 would have been taken bit more seriously I reckon but still think 145 still a bit high for comfort

  • Hi.

    From bitter experience if I was u I would get it checked out. My ca125 was 191 and it was cancer. And even though u are probably perfectly ok u need to be sure. So definatly seek a second opinion.

    Lots of love

    Suzannd. X x

  • Blimey Suzanne- thanks for advice.2nd ca 125 result back tomorrow. Did they think your cyst was suspicious?? do you mind me asking what size t was nad what they thought it was. I just feel pretty vulnerable but dont want to be too neurotic xxxx Hope you are well now xxx

  • It was quite large hun by the time I noticed it it was 16cm by 9cm grew to 18cm. But I was misr diagnosed with irritable bowl first.

    U will be fine but it pays to make sure hun. X x

  • Thanks for taking the time to reply....mine nothing compared to yours but I will probably make decision when get result of next blood test. Take care xx

  • Thanks u too. And let us know how you get on. X x

  • Yep! like the others have said seek another opinion, it is your life and if you don't look out for your self who will? might be no need... It is better to have a false alarm than a wrong diagnosis...best wishes x G x

  • Hi Gromit. I first came to this site in a similar situation to yourself. I had a relatively small (3cm) cyst which was causing pain and bleeding between periods. On ultrasound they thought it probably and endometrial cyst but sent me for CA125 because of my age (45). CA125 came back at 106 so was fastracked to see consultant. Due to my history (endometriosis which has caused infertility due to damaged tubes, and a previous large endometrial cyst which resulted in removal of ovary and tube) he was confident it was an endometrioma.

    Obviously I was a little concerned but having gained reassurance from the lovely ladies on this site that other things such as endometrial cysts cause CA125 to be raised I was not overly concerned, especially as I had no other real OC symptoms to cause me concern.

    However, due to the fact that a cyst was there and CA125 slightly raised, the consultant removed cyst within 3 weeks of seeing him. As thought it was another endometrial cyst. I have had the mirena coil fitted to reduce endometriosis symptoms and hopefully stop any further cysts developing.

    I hope this gives you some reassurance, but as everyone else says you should push for further investigation as they cannot be 100% sure until they biopsy cyst. Also if it is an endometrial cyst, as far as I am aware, they do not go away after time.

    Best wishes

    Gillw

  • Hi there Gromit ...

    Keeping pushing and don't leave it too long ...My ca125 was with in its normal range in Nov 2011 ...after my op in Dec to remove ovarian mass and all my other bits ! at its largest point the mass was 13.5 cm ..results came back in dec that I has stage 1c carcinosarcoma a very rare and agressive cancer ... I agree with Gwyn its better to have a false alarm than a wrong diagnosis ...

    I know a lady who was treated at our local hospital and it took them a year to find out what was wrong with her by then she was at stage 3 ....

    keep us posted and take good care xx

    Love Janet xxx

  • My ca125 was 150 when I was diagnosed with stage 1c Germ Cell cancer. I agree with all the other posters- you really should push it. I'm sure it's nothing, but better to push it and have it be nothing than leave it and have it be an agressive form of cancer. And, if it is cancer, I'm sure you will have caught it early enough! Good luck, and let us know what happens! xx

  • Thank you so much for your response. Do you mind me asking how your doanosis was dicovered /symptoms or no symptoms. Just trying to get as much info together as poss so I feelconfident I am doing right thing if I ask for second opinion. Hope you are doing ok.Sure youve got enough on your plate so really appreciate you responding to my original question.... thanks very much Sarah

  • To be fair, mine was a little different- my cyst ruptured and I was admitted to hospital for an emergency removal of the cyst and my right ovary + fallopian tube. However, prior to the rupture, I had abdominal pain- ranging from light to severe when it ruptured- and I was noticeably bloated (I looked several months pregnant). Thinking back on it now, I was also more fatigued than normal, though at the time I attributed it to university work. I hope this helped, and I wish you luck! :) xx

  • I'm in agreement with the rest - be pushy! Even if it it is an endometrioma, my understanding is that a scan and ca-125 alone will not diagnose this, this can only be done through surgery / biopsy.

    I had a 10cm cyst end of last year that seemed to raise suspiscions immediately. the consultant was convinced it was endometriosis and the course of treatment was zoladex followed by a lap. The histology from my lap came back as endometriomas as well as a borderline ovarian tumor. Have just had my left ovary removed due to a reoccurance of a complex cyst, think this one was 3cm or so, and am awaiting biopsy results.

    stand your ground and let us know how you get on! Good luck

  • I was diagnosed with an ovarian cyst, via ultrasound/physical exam and admitted for surgery to remove the cyst/ovary. My CA125 was only 70. None of my doctors considered seriously the possibility that I could have cancer. ( I think because I was only 29) I, however, was convinced and even phoned the hospital and got them to bring my operation forward.

    Looking back at my symptoms, I was deffinitely bloated ( I looked at least 4 months pregnant), and was tired, but that is all really.

    When I came round from the operation and was back on the ward, everyone was fussing around me and being so kind. The doctor who had seen me in clinic told me 'we're so glad you phoned and brought the operation forward'. When I saw my consultant the day after the operation, they explained that they were all gobsmacked when they opened me up and knew by sight that I had advanced cancer. We had to wait 2 weeks for the official hystology, and then I had to have Hysterectomy/other ovary removed in a second operation. They could not do it in the first operation as I had not signed forms for that eventuality, that is how under-prepared they were!!

    Anyway, this story is not intended to scare you, this all happened 13 years ago and whilst I have not achieved a full remission, I am still here. However, the unexpected can happen and I personally think that if you are concerned this could be cancer, then your doctors have duty to prove you wrong. Their experience may tell them that a case such as yours usually turns out to be nothing and it may well be, but it is not good for you to be this worried.

    I don't think that you have been treated thoroughly enough and find it incredible that the specialist did not even examine you physically. You need to tell them about all your symptoms. I noticed you mentioning pain when going to the loo on one of your other blogs, and this reminded me of when I repeatedly told the doctors that I had constipation and they suggested I should eat more fruit and veg / drink more water. Turns out I had a tumor round my bowel.

    Again, this is not intended to scare you, but the doctors sometimes get it wrong, and we patients sometimes do not present with 'classic' symptoms and so diagnoses are not picked up.

    I really hope that the doctors have got it right with you, but all the same I think that since you are still concerned that they need look a bit further into this.

    Take care (hope I haven't scared you too much)

    Vx

  • Thank you Vicky for your reply. You have not scared me at all just made me more sure that I need to push a bit harder to get the confirmation to put my mind at rest. No result yet from 2nd CA125 - will pester again tomorrow. You are really kind to have shared your story with me...guess thats what this site is all about xxxx

  • Update - result of 2nd ca-125 down to 76 ( work in gp surgery and one of the doctor ranf lab for me..) Think this must be a good sign....not spoken to any professionals but feel can relax a bit now with the insurance that I have another ultrasound in 8 weeks. Cant thanks you all enough for all words of wisdom and support xxxxxxxxxxxxxxxxxxxSarah

You may also like...